It’s Christmas Eve as I’m typing this and I’m just walking around the house anyway with my cup of coffee while my boy rests for a bit, so I thought I would have a little fun time to myself and just take some photos for you of our home to share. Some are right from my Instagram feed, because it looks the exact same, ha. And some are from this morning. It is always fun to me to see how each year is different here, but it all comes together so cozy and that’s all that matters. I want to post more on our home, as I cherish it so much and just really love to see it transform and come to life in different ways. It’s always fun to look back on, I think.

I also want to encourage you to love the home that you are in and the chapter of life you are in right now. Pinterest can be absolutely unrealistic, or even overwhelming, and trying to ‘keep up’ with others ideas or styles may not even be something that you truly enjoy. Don’t wish you had ‘their stuff’ too much, just try to learn to love what you have right in front of you. Once you are able to change that mindset, you will realize that you have all that you need.

I tried my best to capture a little bit of all the rooms and there are areas in rooms you can’t see that aren’t pictured, but you’ll see more soon. These are just some peeks around that give the most cozy feel and to help you get an idea on how I admire cozying up our home for the holidays.

Grab some coffee or cocoa and walk around my home with me. I’ll be taking all the ‘Christmasy’ stuff down after sometime soon, but the lights and some things will still stay up a bit longer to keep it cozy around here in the winter time. Nothing like waiting until the last minute to post this haha!

Merry Christmas to you and yours lovely! Come on in!
xx

“It’s the most wonderful time of the year…”

And this weekend was what we, as a family, have been looking so forward to with our busy schedules. A time to slow down with therapies, finish up with work and just enjoy the time together.

This year was a little bit different, as we had Nana surprise us and come to town to have a cookie day on the same day we chose to decorate the Christmas trees! Normally we do it all sooner, but again, our schedules wouldn’t allow us, so while we still have time (you know, only like two weeks here before Christmas) we’re jumping right in and going all out!

Nana surprised the kids and brought most of the supplies (thanks mom!) and it was just a FUN day with not a care in the world. So many laughs, so many smiles, everyone was in a happy mood and the house was loud with footsteps and echoing voices… take. me. back! Now looking back on this night, I’m praying that we can just unknowingly “plan” to have her here on this day ever year just because of all the shots that I am in too! All the heart eyes. *sigh*

I am a very deep, emotional person. Writing it all out has become ‘my thang’ vs. doing all of those live videos, probably because I haven’t been trained yet to contain my shhtuff.  Every time I have tried to make a video for you guys (so far) I’ve had to stop and redo, you know, because blotchy red face and ugly cry. Yeah, I consider myself the ‘deep, emotional type.’ This is just how I was created to be and at this point in my life, I’m okay with it. I know not everyone is a writer to get where I come from when writing in this darn blog, or if you even enjoy reading things like this, but thank you all for being here with me!

Some mornings I wake up with this extremely strong urge, ready to teach others, feeling motivated in my purpose, filled with hope and drive. Then there are other days when I open my eyes and cringe them tight to only try to go back to sleep so that I don’t have to wake up for the day. Because reality is, it hurts some days. Most days. But no matter the kind of day that I’m having, the passion never changes. Never. That is what keeps me here, that is always what keeps me going. And thank you for never giving up on me.

September 22, 2018 : Five years together on the same day we met

When I think of our Anniversary, this year and I know every one in the future, I think of our story. And our story isn’t just about Ran and I, it’s about all of our babes that came with each of us when we met… we are one big package. And as much as he is mine and I am his and we love each other dearly, we make sure to make the time for just us constantly through the year. So, to me, since our Anniversary lands on the same day that we met, it will always go back to chapter one, when the two of us met the four of them.

We were so happy to have it land on the weekend we had the kiddos so that we could celebrate together and this time we were about to do something that we’ve never done before as a family, just to make it a little more special.

Day 3|5
Thursday August 2nd

San Diego Zoo + Stage Performance day!

After an emotional day before, it was nice to wake up refreshed and look forward to a fun, relaxing day. They had planned a day trip to the zoo for family’s that were interested and we weren’t going to miss it! This was also the first day that we got to meet more families, most which were traveling in today. They had a zoo day planned out for any families that wanted to go. I remember feeling sad that our trip felt like it was ‘almost over’ until I realized it had just begun! There was still a lot in store for us and we were so excited, but little did we know another and even more emotional day was ahead.

Owen woke up super early (surprise, surprise, Sanfilippo.) I took his cpap mask off and had him jump in bed with me for a bit longer to cuddle. But then he fell back asleep and didn’t want to wake up when it was actually time, ha.

Day 2|5
Wednesday August 1

We slept well, woke up being silly and in a happy mood. Today was the first big day of our trip and we came earlier than some families to be here for this day. Today’s conference was ‘Sanfilippo day’ and since Owen’s type of MPS is one without treatment and a little different than some of the others, it was nice to have a day that was dedicated to learning more and just concentrating on us before the rest of the week’s knowledge came rolling in.

This year, our local Junior High Cross Country captains have chosen to run this race in honor of Owen and his journey with Sanfilippo Syndrome MPS IIIA. This was their annual Alumni Run. Our Jr. High runners get their first (practice) 2 mile race and they open it up to all of our alumni, friends, family, and the community. This year, they have chosen Owen as their angel to help and they invited the community to come out in support of Owen and our family and wanted to help by increasing awareness.

This was Owen’s first fundraising event and we are so grateful for the people in our life that took the time to come out for an hour or two and be a part of it with us. It was a smaller and more intimate one and we are so lucky to live in this close and giving community. More shirts and bracelets were sold to those who wanted to help spread awareness and we had so much fun with family and friends.

Day 1|5
Tuesday July 31 || Travel Day

We were ‘flying high’ today in Owen’s Story!
Today we have been in route and made it to CALIFORNIA to attend The Symposium for MPS! It’s a HUGE convention they hold every year at a different location (this year its international!) where we get to meet new families, learn even more about our future + be surrounded by ‘our people’ + we are SO excited!! Owen will attend Camp Courage while we are here for 5 days, playing with other peers and people that understand him and his needs during the days while we attend the meetings, spend time together as a couple and with friends. There are so many fun activities are planned!!

One of the evenings we are here, there is a welcoming ceremony and Owen gets to go up on stage to represent MPS III. It is celebrated as a “Superhero day” for anyone who wants to wear a superhero shirt of any kind to represent our amazing babies. You can wear anything, Superman, Batman, Spider-Man, whoever your favorite is… but of course, I couldn’t resist my creative juices that flowed straight into wanting to create shirts for Owen as a superhero!

One of our recent trips this past week to the doctor has included getting Owen’s breathing issues checked out. He’s always been a heavy breather. Always. I remember when he was a newborn, I had to take him to get his hearing checked since he didn’t pass the hospital hearing test. We finally got him asleep, as he needed to be for the test, and they still were unable to do it because he was ‘breathing too loud…’ Um, what?! Sorry that’s just how he was, I couldn’t do anything about that. He has passed all of his hearing tests since then, but 8 years later, here we are.

So, through all of the different types of tests we’ve been doing, one of them was focused on more when I brought it up and then his allergist helped to follow through and started looking into his breathing. Owen has very restless sleep (which is also common with MPS) but I wanted to make him as comfortable as we could so I wanted to look a little deeper. He had a sleep study done a few months back that showed he had moderate to severe sleep apnea for a child. He moves about every 10 minutes or so (as we are able to catch on his camera here at home) and during the study, it showed that he stops breathing for more than 10 times in the night for about 8-10 seconds each time. (Um, yikes.) The doc said with him being monitored, they could measure things that the eye can’t see. Things such as some of the moments that he may look like he’s breathing but nothing is actually coming out for those 8-10 seconds, his airway is about closed. His tonsils were checked out after his sleep study and were not even close to being enlarged, so there was no surgery needed there. We found out his airway is a tad smaller than normal, which makes him breathe heavier through both his nose and mouth to get the extra air in. If I had to describe it to you, at times, he sounds like Darth Vader from Star Wars, ha. Poor kiddo. He would sound like this just laying on your lap watching a movie, and without being able to see his face clearly, you would think he fell asleep. That’s how deep and steady sounding his breathing is.

June 9, 2018
It was a rainy, icky morning. Randy and I woke up extra early to start packing and made everyone lunches. We had to travel about 3 hours to get there, so we were hoping and praying that the clouds and sprinkles of rain were going to subside. There was a whole day ahead of us of walking around the zoo, planning to meet with doctors, listen to a few speakers and it was a great opportunity for us to meet other families. With all of the emotions already building up, all we needed was the sunshine to kick start our day. We packed up the car, woke the other babes up and got on the road! Owen was riding with his dad and was meeting us there, so the other kids enjoyed being able to sleep on the way… and I was of course a bit happier and awake once I grabbed a fancier coffee than my cold cup that wasn’t even touched at home and was able to sit in one spot with nothing to do for a moment, ha.